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Neuroendocrine Cancer Awareness Network Inc

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Nonprofit Overview

Causes: Cancer, Cancer Research, Digestive Diseases & Disorders, Health

Mission: The Neuroendocrine Cancer Awareness Network (NCAN) is a 501 (c) (3) non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, Carcinoid and other types of tumors. By providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been our mission, or as we like to say, our passion, to educate and support the NET community as a whole. That’s our thing.

Results: Because neuroendocrine tumors (NETs) are rare cancers with no celebrity spokesperson or widespread recognition, patients need to be their own best advocates. You need to be aware of all the new diagnostics and effective new treatments available. If you are, how do you sort out what’s right for you? If you aren’t, how can you get informed? That’s what we’re here for. For the past 15 years NCAN has provided information and support to NET patients and caregivers through e-mail, our web site, and our toll free hotline. Whether you need information or a friendly person to talk to, we’re always here to deliver. You can reach us at 1-866-850-9555, 7 days a week, 365 days a year, from 9 am to 9 pm EST. Either a patient or caregiver will answer your call. It’s important to us that you know the person on the other end of the phone understands first-hand about NET cancer. Or, if you prefer, email us at info@netcancerawareness.org . We answer all emails within 24 hours. You’re not alone. We’ve mailed out several thousand free information packets worldwide. There’s a packet waiting for you. Just let us know when you’re ready to receive it. We’ve also provided many support groups around the world with information, merchandise, and awareness items. And we’re just getting started! The NCAN organization has produced over 75 conferences around the country as well as regional conferences designed for local audiences. These conferences help keep patients and caregivers up to date on information impacting the decisions made regarding their care, including new diagnostics and treatments available. These conferences are also a great opportunity to connect with other patients and caregivers who understand exactly what you’re going through, first hand. We also exhibit at medical trade shows and medical meetings such as Healing NET Foundation Summit, NANETS, ASCO, ASCO GI, Digestive Disease Week, Interventional Radiology, The American Association of Endocrine Surgeons, and local fairs. NCAN also produces a number of fun, family-friendly fundraising events throughout the year. The Annual Celebration of Life Gala, Strides for Stripes Zebra Walks and Virtual Walks, and Comedy for a Cure to name a few. Check out our calendar of upcoming events at netcancerawareness.org and get involved! We need you, to do what we do. NCAN'S Nationwide Chapter Support Groups are ready to share their experiences with you! These are places to get info NCAN works closely with the pharmaceutical companies to get the most updated information regarding treatments coming in to clinical trial and the pipeline. NCAN is a proud member of the World Pancreatic Cancer Coalition An NCAN board member has served as an adviser on the following boards: - SPORE External Advisory Board as a Patient Advocate 2011 - present. - NANETS from 2009 - 2016, - Healing NET Foundation 2014 -2016

Target demographics: Neuroendocrine Cancer Patients, their families, caregivers and medical professionals

Direct beneficiaries per year: In 2018, more than 450 patients and caregivers attended our national patient conference. Our new chapter program provided 20+ NET patient support groups with educational materials and leadership training, creating a national network of support. This chapter support group program continued in 2019. Other long-standing programs like, the Patient Information Packages which are sent to patients and caregivers by request, our patient hotline, and other related services, connected with over 1,200 people in the NET community. Patient conferences were attended by about 600people. Your help ensures that NET patients and their families have access to the programs they need for information and support. This is priority one for NCAN. We are extremely grateful for your interest and potential support, and look forward to partnering with you in 2020 and beyond.

Geographic areas served: Locally, Nationally, & Globally

Programs: We have a toll free hotline opened 7 days a week 9 am - 9pm EST. The phone is answered by a Patient or Caregiver at all times. We send out free information packets to anyone interested. NET Conferences for Patient, Caregiver, and Medical Professionals. Our NET Patient conferences , and Medical professional events across the county!

Community Stories

170 Stories from Volunteers, Donors & Supporters

3 ajungling

Client Served

Rating: 5

My name is Alex, and I am 25 years old. I was married 11-09-2019, turned 25 11-22-2019, I was admitted to the hospital 11-26-2019 for Pneumonia, and then diagnosed with a Neuroendocrine Tumor of the left lung 12-02-2019. It was a whirlwind of a month for me. Upon my diagnosis I was told that my Carcinoid tumor (The term the doctor used when diagnosing me and explaining the situation) was "no big deal, and that as far as cancer is concerned this is a good and easy one to get!" I was not given any information further about my condition. All I knew was that I was going to have to have surgery to take the tumor out, and that a pulmonologist office would be in touch with me for some breathing tests. I was released from the hospital 02-05-2019. Due to my severe pneumonia (that turns out was caused by the tumor blockage) I had to be on heavy antibiotics and wait for it to clear up before I could go any further with my care. (they suggested 2-3 weeks before it would be cleared enough to do any type of tests) About a week after being released from the hospital, I decided to do some research. Yes, I did what everyone tells you not to do, I Googled!! I was horrified!! All I could find at first was older information about Carcinoid tumors that pretty much told me I was going to die. Upon further research (after I had a small mental breakdown) I was lead to NCAN. After realizing that Carcinoid is Neuroendocrine, I was able to get some real information. NCAN has been a blessing. NCAN and my support group on Facebook (loveable lungnoids, which includes members of NCAN) have helped me in so many different ways. I was able to find information, support, answers, and best of all a community. Honestly I feel lucky to have this cancer because of the community it brought me to. I only hope that other type cancer patients have the same type of support and resources! I honestly can not imagine what my diagnosis and my journey would be like if it wasn't for them. I had my surgery to remove my tumor 01-23-2020. My surgeon was unsure at the time of surgery if we were going to do a lobectomy or a pneumonectomy. I went into surgery unsure of if I would come out missing part of my lung or all of my lung. Turns out the tumor was larger than they realized and yes they did have to do a pneumonectomy and remove my entire left lung along with 16 lymph nodes. This was done by a thoracotomy, unfortunately VATS or other robotic surgery was not an option for me. NCAN was a great resource leading up to surgery. It gave me information on what I needed to know before, during, and after. It made me aware of the dangers of carcinoid crisis, and what I needed to do to make sure my doctor knew about this and was prepared to act in the event it happened. NCAN also helped me in knowing what type of tests and scans I needed and exactly what questions to ask my surgical and care team. NCAN also lead me to a NET specialist locally that I was able to go see (after surgery) and add to my care team! I am now NED, and NCAN still continues to be a big resource in my life. I am now looking at my life post NET and I still feel lost sometimes. Maryann, the founder, is amazing. Maryann connected me to her daughter Tricia who was able to talk with me about some of my post NET life concerns. It was one of the best conversations I have had in a while. I am so grateful to both of them for the amount of time they took with me and the information and advice they were able to give. They honestly care about the members of the NET community! My experience with NCAN has been a life altering and life saving experience. I am not kidding. It seriously helped me through the toughest time of my life, and continues to help me. I know that this NET battle is a life long battle, and I also know that NCAN is going to be there for me and all NET patients through it all! I am proud to be a Zebra! I attached some pictures. The first picture is my mom and I day of surgery, the second is me the day I moved from the ICU, third is me walking the halls of the hospital (about 8 days from surgery), and the last is me 11 weeks post surgery!

Laurie B.9

Client Served

Rating: 5

I cannot imagine not having this group. My mother was just diagnosed with NET in her lungs and after talking to the group and the admin, I realized my mom was seeing the wrong doctors and not being tested for the right things. I feel so fortunate to have found NCAN and I can't imagine going through this without them. Their advice and support is a gift like no other. I will be eternally grateful.

Client Served

Rating: 5

Our dealings with Neuroendocrine Cancer Awareness Network have been very informative since it's inception. Maryann and Bob Wahmann, who are the founding members, provide resources and educational information that are attuned to the latest developments in the neuroendocrine healthcare. This is accomplished through group meetings, state and national conferences, user friendly website - just to mention a few of the many services provided.
My husband is a patient with neuroendocrine disease diagnosed in 2005. We have used these resources many times through the years. They have provided personal support and guidance during difficult times. We are blessed to have a neuroendocrine community of people with shared experiences who we have befriended and could turn to in times of distress because of this organization.
For a rare cancer it is indeed so beneficial to have these tools provided by NCAN.
Thank you NCAN team!

Nancy Adams K.

Client Served

Rating: 5

When first Dx w lungNets back in 2009 I was uninformed and naively believed everything my oncologist and surgeon told me...my onco was great and explained NETs to me and answered all my questions; the surgeon basically said go live your life, I was good to go after my lobectomy. I continued w scans and bloodwork and on my 5th yr anniversary scan we found bronchial mets....at this time I knew I needed more help. I googled neuroendocrine cancer in Ohio and a Buckeye group came up...I attended my first support group meeting in Columbus in May 2014, met many NET patients and was overwhelmed with information. I was advised to contact NCAN.(Neuroendocrine Cancer Awareness Network). I did so and received brochures,a packet of educational info and learned of their Facebook site. From there I learned of more FB sites, other support groups and have always been able to have questions answered quickly by Maryann. The conferences and presentations are always full of great speakers with current and future treatments, meds, and trials. This is a worthwhile organization that helps so many newly diagnosed patients.

Lori R.3

Client Served

Rating: 5

Going through for the years I have been is difficult. NCAN has been a great help in so many ways. I live in a rural area and not many doctors around me or people are familiar with NETs. Maryann and NCAN are available for support not just with giving resources but also to talk. Over the years even as she has been fighting this terrible cancer she has been there for me. Thank you. You are great!

General Member of the Public

Rating: 5

My husbands battle with the rare Neuroendocrine Cancer (NET) began at the end of October 2020. Within days of his release from the hospital the first source for helpful information and support was NCAN. I was able to attend an online virtual event in early November and was able to finally start putting the puzzle pieces together. NCAN was a game changer for us both! It remains so and is a source of information on a daily basis. We've learned more about this type of cancer from NCAN than any other resource. Thank you NCAN!

Professional with expertise in this field

Rating: 5

I have worked with NCAN for over 10 years and can attest to the wonderful work they do to raise awareness and help educate patients and caregivers on current techniques for the diagnosis and management of NETs.

General Member of the Public

Rating: 5

An awesome group with a wealth of information and resources. I’ve gained so much knowledge and received a lot of informative materials. Keep doing what you all are by sharing, caring and guiding.

Professional with expertise in this field

Rating: 5

This is a fantastic organization committed to NET patient care, education and support. Patients who have attended the conference speak highly of their experience and count NCAN as one of their blessings. As a medical provider I have learnt a lot about advocacy and the impact that empowering patients with knowledge can have. The dedication, hardwork and commitment from Maryann Wahmann and her team shows in every event, interaction and communication I have had.

1

Professional with expertise in this field

Rating: 5

NCAN (Neuroendocrine Cancer Awareness Network) has been a great organization for patients with neuroendocrine tumors (NETs). They have been for many years a great source of updated medical information about the most cut edge treatment options for NETs' patients. In addition they have a great interactive educational sessions with NET experts from around the country which definitely give patients a great opportunity to ask questions and to be educated about their disease. I highly recommend NCAN as a great patients advocate society for patients with NETs.

1

General Member of the Public

Rating: 5

I was dx in 1999. A few years after NCAN started. They have been the best support through my journey. Keeping me up to date with all the latest information and giving support on those rough days. Very blessed to have NCAN support as I navigate this rare cancer.

1

Client Served

Rating: 5

We are so thankful for the NCAN, not only did I receive excellent information to review but also a very personal heartfelt conversation on personal experiences and suggestions on things we can do to help with my husband current unresolved issues after surgery. Such a wealth of information and Maryann is super sweet and very easy to talk to! Thanks again for all your help! ❤️

1 April Boyd G.

Professional with expertise in this field

Rating: 5

Maryann and her team are a joy to work with!

I contacted Maryann to be able to learn more about the cancer patient experience directly from patients. A strong advocate for herself and others, Maryann and I worked together to educate patients about remote symptom monitoring and invite patients to give direct feedback on tools that my company, Carevive, is developing to help fill gaps in cancer care. Together, we distributed a survey and hosted a live Zoominar for the Network and their friends and had a great response!

Other patients quickly feel comfortable with Maryann, who uses her knowledge and experience to help them get connected to care and support during a difficult time. Her responsiveness and passion are trademarks and I hope to work with Maryann and her team on other projects soon.

1

General Member of the Public

Rating: 5

NCAN has been an absolute blessing for me and my family. Upon learning that my mother was diagnosed with a NET, this was the first place we were able to turn to for information and guidance. MaryAnn is INCREDIBLY knowledgeable and she truly cares about what's going on. She's easily accessible and gladly shares what she knows, and was able to direct us to the care of a specialist. THANK YOU THANK YOU THANK YOU!

1 TomNW

Client Served

Rating: 5

NCAN is a 24/7 resource for NETs patients/family/friends that is selflessly run by Maryann and Bob Wahmann. The administrative overhead is minimal and every facet of this non-profit is geared to service for the patient!

As a 7+ year NETs patient, NCAN has been of inestimable value to me for information, referral and support.

Previous Stories
1

Client Served

Rating: 5

After 7 years of a lack of resources, accurate diagnosis & a general ignorance of NETs in my community - with my case including 2 major SB resections and metastasis from the ileum to lymph nodes, mesentery and pancreas - I was DESPERATE for answers and help. NCAN has been such so accurate, informative and understanding - with the founders asking NOTHING and giving EVERYTHING to help me be better educated, connected and able to advocate for myself & others. This "nonprofit" works WITH others - in concert with competing nonprofits, groups and organizations for the benefit of patients, physicians, research, advocacy - a totally selfless service that continues to benefit me & so many others. THANK YOU NCAN, Maryann, Bob, staff & volunteers!

Client Served

Rating: 5

Hi my name is Anita Lux. My sister was diagnosed with NETS on a Friday. Of course, we go straight to the internet, probably not a good idea. We has it set in our minds that she would live 5 years. Then I joined a facebook page and Maryann Wahmann reached out to mefrom the Neuroendocrine Cancer Awareness Network. From the beginning, Maryann was a true GOD SEND. She offered to meet with me and my brother in law via zoom immediately (on a Friday night). We met and I absorbed so much information and now have a support system. Yes, day 2, I woke up knowing I had a support system that we could depend on. We met with Maryann again via zoom early Saturday morning (she so graiously offered to do this so my sister could be inculded this time). So now, even before our oncology appointment, we feel we have been well informed. The feelings I had after our meetings were indescriable, knowing that we have the knowledgeable team and support system to go through our journey with us. We are now part of a TEAM! Thank you to Maryann!

Board Member

Rating: 5

Here is my story of NCAN. I now serve as a board member because I believe in NCAN mission!

Laura Robinson M.

General Member of the Public

Rating: 5

It will wake: You’re so young you will heal up quickly. Plus Carcinoid once removed , it is never a problem later. Well, That Lie made everything change. 2004 my appendix blew in The surgeons hand. And she said it was messy. She found a rare tumor called a carcinoid tumor, she said it’s not a big deal we will do a right colon hemicolectomy I was 22 years old. No one knew anything about Carcinoid, yet alone a Syndrome? A few years down the road I became very ill. My family doctor knew I had Carcinoid Syndrome, but the other doctors believed it was in my head. Or I had something else. I didn’t and don’t show in my scans at all. My left lung they found is a scar tissue not from asthma but of this cancer. I needed more information. I looked so hard but then I found the NCAN the true “Hope for NET Cancer Patients, it does start here.” It really does. All you have to do is Ask, and that answer will be given. Or it will be found. There are so many Facts, Answers, and Real People who will listen to you at any moment in need. I have learned so much, and the help that I have gotten. I know that I’m in amazing hands when my doctors say to me “I’ve never heard of that symptom.” I can go and get ahold of NCAN, explain the issue, and there will be some sort or answer. Since our cancer is so Rare and so Uneducated, they are helping us by having a mission to not let us slip through the cracks. You can tell this is their passion. They get 5 Stars all the way. Laura Robinson-Marsh

1

Client Served

Rating: 5

I was diagnosed April of 2014 with a neuroendocrine tumor of the ilium. My local oncologist referred me to a NET specialist at Mount Sinai Hospital in NYC, Dr Richard Warner. I went to my first appointment with so many questions about this rare cancer. There wasn't alot of information out there at that time. Dr Warner answered all of my questions and also suggested I go to a NET conference that was being held later that month in NJ. That was the first time I met Maryann and Bob. I learned so much at that conference. The most important thing was I was not alone. My husband and I have since participated in many NCAN confrences and events.
Maryann and Bob have done so much for the NET community like spreading awareness,education and Netspiration with Maryann just to name a few.
I'm so grateful that I went to that conference and met Maryann and Bob. They have helped me through this ongoing journey.

1

Professional with expertise in this field

Rating: 5

NCAN is a national organization that helps Neuroendocrine Tumor patients navigate through their disease journey. They provide support for these patients by hosting national conferences, local/regional/national support groups, and patient events. They engage in virtual communication and offer daily inspirational podcasts regarding life with NETS. Maryann and Bob are one of a kind. They care for these support group members as if they are their own family and provide resources and a helping hand. They have dedicated their lives to the mission and let NET patients know that they are not alone.

2

Professional with expertise in this field

Rating: 5

Maryann and Bob at NCAN have been a great resource for educating patients with neuroendocrine tumors! They have been a pleasure to work with.

1

Donor

Rating: 4

The NCAN team does their very best to keep patients and their families informed about NET, as well as offering advice and resources. They mail materials, host educational events, provide inspirational content, and spend hours on the phone answering questions and connecting people to the help they need. NCAN has also established a network of support groups around the country to make education and support accessible, especially in areas that are underserved by medical experts.

1

Volunteer

Rating: 5

My family has volunteered with this nonprofit for years in many different capacities. We have seen them grow year after year. We have helped out at the walk in Nassau county, New York. We have helped out in many different ways at the annual Gala also in New York. We saw first hand how hard the Wahmann family works at the national conference and many other events. I have attended a different non profit conference that has been around longer and has more $(different disease) and was so disappointed with how poorly it was run compared to ncan!!
Naively I thought it would be run as well and as smoothly as Ncan. Maryannn,Bob and family work and travel to help spread the word about this disease and how to fight it. Getting information out is something they have been doing for years. Coordinating with drs, drug companies and patients is something they are passionate about. Getting funding for nonprofits is an uphill battle especially for lesser known ones but this hasn't stopped them . They do this day in and day out. They do this not just for themselves but all patients and families that this disease has affected.
We are proud to help them in any way we can.

1 Patty Ann L.

Client Served

Rating: 5

I have learned more from this resource than I did from the hospital staff. Their support helped get me through rough times. Always educational.

1 Rebecca Korzenborn Agner R.

General Member of the Public

Rating: 5

Without the Neuroendocrine Cancer Awareness Network,
I would never have found the help I needed. Being treated by a specialist is an absolute must with our cancer.
MaryAnn had the resources that lead me to Dr. Anthony at the University of Kentucky. Now all I have it one tiny tumor left and it’s trapped in old scar tissue from treatment in the past that wasn’t what I needed. If you don’t see a specialist, you can’t get the proper care.
Thank goodness for Neuroendocrine Cancer Awareness Network.

General Member of the Public

Rating: 5

My wife has Neuroendocrine Cancer and while searching for information on her cancer she became involved with Neuroendocrine Cancer Awareness Network. She began to discuss lab tests, scans and other tests for patients which were not available in our area. She discussed different treatments and wondered if they could help her cope and feel better. Truthfully, I listened but privately didn't know what to expect.

In the fall of 2014, we attended a National Conference hosted by NCAN. At the conference, as we met other patients and caregivers, I watched my wife come back to life. I realized we both needed this outlet for education and support.

We have continued to be involved with NCAN and attend as many functions as possible. We participate in a monthly NCAN support meeting for our in state patients. Several caregivers attend the meetings and we are able to share within the group or privately. Everyone encourages the other members, celebrating the good times and supporting each othef during the bad days.

I look forwarc to the conferences and educational seminars where we attend the educational sessions, make new friends and reunite with old friends. NCAN is very beneficial to NET patients and plays a vital role in the life of the patient and their caregiver.

Paula47

Volunteer

Rating: 5

There are no words to adequately express my gratitude and appreciation for Neuroendocrine Cancer Awareness Network (NCAN) and for everything they do to bring awareness, hope and education to the NET cancer community. Under the tutelage of Maryann and Bob Wahman NCAN has touched and impacted the lives of NET Cancer patients in ways that far exceeds other organizations.

NCAN, makes every effort to educate and encourage NET Cancer patients and their families. Upon contacting NCAN the patient or caregiver receives a ' NCAN New Patient Package' which helps the patient to better understand NET Cancer and how to navigate the NET Cancer journey. NCAN provides hope where there was none.

NCAN hosts National Conferences and Regional Seminars in which acclaimed NET Cancer Specialists present topics on treatments, surgeries and nutrition. During these events the patients have the opportunity to ask questions and often receive valuable information to share with their local doctors. Also, the patients have the opportunity to meet other NET Cancer patients and create strong friendships. This may be the only time a NET Cancer patient meets a fellow patient.

NCAN, keeps the costs associated with attending the events to a minimum. Neuroendocrine Cancer is an expensive cancer to treat and many patients have lost or given up their jobs as they are too sick and fatigued to work. In addition, NCAN posts many presentations on-line in order that as many patients as possible have ever access to the material.

Many NET Cancer patients are told, 'NET Cancer is the best cancer to have.' I can't agree with that statement but I irrevocably state that 'NCAN is the best Nonprofit group for NET Cancer.

Previous Stories
4

Client Served

Rating: 5

I am approaching my 4 year anniversary of my Carcinoid/NET surgery and I am thankful everyday for the people who have offered me encouragement, shared knowledge, and helped educate me about this devastating form of cancer. Carcinoid Cancer Awareness Network is at the top of my list of people/groups to thank. May 14, 2011, I was in the emergency room with a blockage in my small intestine which required surgery. I was shocked to learn the blockage was caused by a malignant carcinoid tumor but was assured the Doctor removed all the tumor and I would be fine. After all," this is a slow growing tumor, it is the best type of cancer to have and I would feel better than I had in years".
I went home and kept waiting to feel better, I waited for one and half years and I was not improving, if anything I was experiencing more problems. I started searching for information and came across Carcinoid Cancer Awareness Network and I contacted them immediately.
I can not begin to express what a difference that phone call made in my search for answers. CCAN talked with me, not at me, and provided information about Carcinoid/NET, helped connect me to support groups and mailed me an informative packet.
This past September I attended a Carcinoid/NET Conference sponsored by CCAN and was in the company of other patients and the top Doctors who specialize in Carcinoid/NET cancer. I was amazed at the low cost to attend this conference, how organized it was and how much I learned. It was very clear the speakers were dedicated to making a difference in the quality of life and life span of patients.
CCAN is available to us every day and offers a warm voice and caring person to answer our questions, help soothe our nerves and point us in the right direction. I cannot say enough about what a wonderful source CCAN is for people living with a rare type of cancer where there is little awareness.

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Karalyn

Client Served

Rating: 5

NCAN has helped my family and many others! They are vital in our cancer community.

Previous Stories

Client Served

Rating: 5

Maryann and Bob have changed this cancer. It was once so rare that no one even knew where to start to get help. Because of their consistent effort, hard work and passion for awareness, doctors and patients alike have a place to turn for help and guidance. Thankful for them daily!

Read more

Volunteer

Rating: 5

NCAN is a true patient advocacy group that is comprised of all volunteers, many of who have this rare form of cancer. The founder of the group is a patient who has taken up the cause to brings awareness of the disease not only to the patients but to the medical field. Because of their efforts there are now more doctors and pharmaceutical firms are focusing on the disease.

1 Casey Arnett L.

Advisor

Rating: 5

Ncan has been a great support group for our family . The information ,knowledge and understanding these members and leaders have helped us so much . Being able to find someone knowing what your going through and sharing experiences is such a blessing . Thank NCAN for all your hard work and research.

Volunteer

Rating: 5

Nine months after my Neuroendocrine Cancer diagnosis, I attended my first NCAN regional conference. That day was a defining moment in my new life as a cancer patient. The presentations and the professionals were exceptional, but it was the experience of meeting others who shared my rare diagnosis that allowed me to believe in my future again. Bob and Maryann have devoted more than a decade of their lives to bringing awareness of Neuroendocrine Cancer to a very poorly acknowledged group of cancer patients. Their efforts to educate medical professionals and patients are a direct link to the high quality of care I now receive. I am eagerly anticipating my third NCAN conference in September 2019.
Thank you, Anne Dabbs

Volunteer

Rating: 5

NCAN provided valuable information to my mom and I to help guide us to the right specialist. They have provided support, encouragement and a sense of unity that I can not begin to explain. I am forever grateful to NCAN.

1 Shawn W.2

Volunteer

Rating: 5

When my world of cancer became dark and dreary NCAN was a blessing in my sea of suffering. They were like a guiding lantern lighting up my life and saving me from additional strife.

Client Served

Rating: 5

I feel so grateful for all that NCAN has done for me since DX just two years ago. I have been able to attend two NCAN conference meetings, where I learned first-hand about my rare disease. I have met doctors, patients and advocates who provided so much insight. My anxiety level continues to decrease and I fee fortunate to have such an invaluable network I can depend on. Thank you Maryann and Bob for being there when I needed this resource so desperately! - Kathleen

Melissa D.5

Volunteer

Rating: 5

I was diagnosed with a PNET 12/2017. I have never heard of Neuroendocrine Cancer prior to this. I get online and start to Google, I came across NCAN's website and requested a patient pack be sent to me. It was so informative and I quickly learned a lot of information. I then spoke to Maryann a few times with questions. In March of this year I got to meet Maryann & Bob along with the rest of the NCAN leaders and I have to say it was the best feeling I have had in a long time. Everyone is so wonderful and the support they have for patients and caregivers is above and beyond. I am so happy that I found another family and great support system.

Toba W.

Client Served

Rating: 4

When I was initially diagnosed in 2012, and subsequently had my Whipple, Mary Ann was very positive, and encouraging. I have called on her a few times and she had been able to answer the question I had or refer me to someone that could. Thank you Mary Ann.

Toba

Previous Stories
1

Client Served

Rating: 4

Is this what you were speaking of Maryann? I thank you for and appreciated the Initial Packet, and being there to "talk" and offer help. I tried to post a photo and it won't let me.

Erica W.4

General Member of the Public

Rating: 5

I was just recently diagnosed with this cancer and would love to know who to speak to about it. I can’t find any info on th web about this. Who do you talk to to get a the information you have? I’m 33 years old and want to have a better understanding of my cancer. Neuroendocrine cervical carcinoma. I was told it’s rare and they want to treat it like lung cancer. Still trying to figure out how to reach out to people here to talk and get info. Help please:)
I live in Nashville TN. Not sure why it says NC

1

General Member of the Public

Rating: 5

I have only recently been diagnosed with NET (3 weeks ago) and thus far NCAN has been more helpful to me as a resource than my own oncologist. I have already received information on background of the cancer, labs to request, doctors to seek out, nutritional information, support groups, etc. Due to the rare nature of this type of cancer, there are so few solid resources unless you live in/near a big city. NCAN provided a tremendous amount of information that even Google searches would not have uncovered. NCAN is an invaluable resource. I couldn't recommend it more highly.

Volunteer

Rating: 5

Words cannot express my deep love and gratitude for NCAN. They care immensely for the community, make it their priority to help others in all ways possible, put on amazingly educating conferences that change people’s lives and so much more. Being a part of these conferences have been vital in keeping my husband alive and well. We are so fortunate to now be a part of it as well as have gained so much from all they do for the NET community. I am in awe and inspired daily by them!

4

Client Served

Rating: 5

I have been a nurse for 26 years and was diagnosed with Pancreatic Neuroendocrine Tumor in December of 2010. I had been getting progressively sicker over a period of years, with bizarre symptoms, flushing, rash that would lead to anaphylaxis. I was down to 85 pounds and nearly died. I had surgery at MD Anderson Cancer center in February of 2011. I was told NOTHING about my tumor, a PNET and the surgeon literally told me that “if your cancer comes back, we take it out”. No other info. 5 years later, after being told by a local oncologist I didn’t need any follow up, I was diagnosed with metastatic disease to my liver and had surgery to remove one lobe. Again I was told nothing about my type of cancer, and was told by an Oncologist the I was “way overreacting” to my new diagnosis when I was crying and upset. Again, I was told nothing about my cancer, and continued to fight these episodes of flushing, rash and fighting off anaphylaxis. My Dr ignored all of my symptoms, and did no further testing. Finally, a family friend who is a radiologist told me that my cancer was rare, and two weeeks ago I googled NETS and found a support site. I was finding information everywhere and literally stayed up the entire night on the internet researching my disease. I found Maryann’s name mentioned several times in patient forums, and everyone said to call her. I reached out to Maryann yesterday (July 13th) through Facebook. She said to call her the next day (today). I can honestly say, through the years rolling down my face, that this woman, a NET patient herself who has devoted her life to this disease is saving my life. At 2:30 in the morning, having no knowledge of any NET specialists in New Mexico, she had a name of a Dr who specializes in this disease, the information that the scan I have needed for years just started here, and I called and had an appointment with this new NET specialist, Dr, Heloisa Soares at UNM cancer center (where I had surgery for metastatic disease in 2016) in one week. I have been suffering with undiagnosed symptoms for years, and in a few hours I was on my way to finally getting the treatment I have needed for years. Maryann and her dedication to this rare cancer is saving my life. I was so sick and so tired of fighting this unknown disease for so many years that last year I was going to take my life. I am grateful that because of my two children I did not. I will dedicate the rest of my life to spreading the word about this cancer and helping and advocating in any way I can any other person diagnosed with this disease. I will be forever indebted to this organization and it’s founder for giving me expert Information and the relief that I have will finally have the knowledge and treatment I need. I say a heartfelt thank you to Maryann and all the people involved in this great organization. I only wish I had found them years ago.

Comments ( 1 )

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carcinoidaware 07/15/2018

It was my great pleasure to help! Please keep us updated!

1 Geri M.1

Volunteer

Rating: 5

As a patient and a support group leader, I am blessed to have our group as a member of NCAN. Before I learned about NCAN I had a local independent support group that fell apart when I had personal health issues. With the help and support of NCAN we now have a local group that will be sustainable because of the invaluable information, training and support we receive.

1

Client Served

Rating: 5

I had the opportunity to attend NCAN's Chapter Leadership Training last week (04/13 - 04/15). It was an outstanding meeting in which I learned so much about the structure of a successful meeting. Most importantly, I gathered important leadership skills which I will utilize within our local group.

The agenda was well presented and followed by the speakers, presenters, patients and caegivers. The facilitator, Rick, kept the meeting running smoothly and adhered to the allotted time frame for each segment with breaks for meals. The sessions began and ended on schedule which requires skill when people are asking questions and sharing input. Rick managed to include everyone and each participant had the opportunity to be involved.

The presenters were very well prepared and knowledgeable in their area of expertise. As a patient, I am thirsty for information about Neuroendrocrine Cancer, a complex disease which is hard to detect, and treat. It is wonderful people, such as the speakers and presenters who participated in the meeting, that keep us informed and encouraged.

The meeting crystallized the importance NCAN plays in so many patients well being. Maryann and Bob Wahmann, the staff and volunteers are relentless in their passion to bring awareness to NET Cancer and to assist patients and caregivers on their NET journey.

The knowledge and skills I garnered at the meeting will be utilized to conduct our local chapter of NCAN support program and meetings in an empathic, knowledgeable and proffessional manner. The knowledge will be utilized to better meet each members needs and identify ways we can be of service.

Thank you to everyone that helped in making the meeting a success.
A special thanks to; Maryann, Bob, Patrice, Rick, Dr. WANG, Leigh Ann, presenters and all sponsors.

Paula Hurt
TN Chapter (NCAN)

Danielle G.2

Volunteer

Rating: 5

First time attending the NCAN conference. This is for chapter leaders. I have learned so much about myself, other people facing this cancer. Knowledge, tools, friendships. Amazing. Thank you Maryann, Bob, Patrice and Rick for taking me under your wing and tackle this cancer with awareness and love. Incredible Dr. Wang as well. He is a hero. Thank you again. Danielle

1 Annie M.3

Volunteer

Rating: 5

I attended the national patient conference 2 years ago when looking for answers and direction with a lack of such anywhere else. The information presented was invaluable and has led me in pursuit of not only obtaining the best care I can get for myself, but the ability to extend to others I come in contact with who may be looking for the same. Mad love and admiration for the founders and those involved in this foundation!

3 Connie F.1

Client Served

Rating: 5

In April 2013 I had exploratory surgery and diagnosed with stage 4 Neuroendocrine Cancer with primary small bowel and multiple mets. I was told if I had" to have cancer this was the best to have". I started searching for information ( being a nurse for 39 years I needed to educate myself). I came across the NCAN website. This website was so informative, educational and had lists of NET specialist. I did attend a National Conference and plan to go again in September. I give many thanks to NCAN for this opportunity to continue to be educated. So important for Zebras in fighting this cancer! The staff has always been helpful and kind to me.

1

Advisor

Rating: 5

Professionalism at it’s finest. Maryann, Bob and the rest of the board are always thinking of the patients first and how they can make Neuroendocrine Cancer better known in the medical community as well as the public. What a great cause!

1 Tom D LI

Client Served

Rating: 5

NCAN has been a lifesaver for me by educating me about my rare cancer and its treatments. Cancer is scary enough but I feel empowered by the knowledge that I have gained to have an informed conversation with the many doctors who treat me and the new treatments they offer. I am amazed at the high quality programs that they offer to patients, caregivers, and healthcare providers with minimal costs to participate. I am also deeply thankful for the many friends I have met through NCAN.

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3

Client Served

Rating: 5

I learned about CCAN after having surgery for a pulmonary carcinoid and have found them to be of enormous help in understanding the nature of my disease.

- Upon my first contact, I was greeted warmly and had many questions answered, including contacts of people willing to speak to me about their experience with this rare disease. I also received a large package with all types of information.

-Meetings are well focused and very informative.

-CCAN hosts a variety of conferences and other events that bring the top physicians in the field to educate patients and support people on the latest developments and answer questions.

- The management team at CCAN is very dynamic and is a major force in raising awareness about this rare disease at all levels.

Comments ( 1 )

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carcinoidaware 06/21/2011

Thank you for the wonderful review! See you in August for the conference. Stay well.

Client Served

Rating: 5

The folks at the Neuroendocrine Network are always very helpful. They provide much needed information and counseling on this rare disease. The conferences are invaluable for patients and caregivers.

Amanda Arnett E.

Client Served

Rating: 5

My mom was a Zebra (carcinoid patient) this organization has helped us empower ourselves to reach out and find the best possible treatment options and has provided support second to none. I hate to think where we would be with out the amazing conferences they organize. Thank you!

Maria S.2

Client Served

Rating: 5

After over 7 years of struggling with this dreadful disease and exhaustive searches for the right medical care NCAN came to the rescue. I attended one of their sponsored presentations in another state and within weeks found the best medical team I’ve ever encountered. I now have the care I need, that I can afford and a game plan for my future. I am no longer battling this disease alone. Forever indebted to this organization and the tireless, caring people who run it.

1 Sylvia Fletcher L.

Donor

Rating: 5

NCAN is an awesome nonprofit organization! The Neuroendocrine Cancer community doesnt receive funds from the American Cancer Society as the more common cancers do. So, it's phenomenal that NCAN spreads awareness for the medical community, patients, and caregivers through fundraisers, conventions, etc. Thank you Mary Ann and Bob for all that you do.

1 Lisa McCall B.

Client Served

Rating: 5

I was dx with stage 4 Neuroendocrine Cancer Jan. 2013. Having a long family history of cancer (none Net) I felt lost and hopeless. I had never heard of Neuroendocrine and frantically searched the internet. I stumbled across NCAN & reached out to Maryann who sent me a package full of helpful information. I sincerely thank NCAN & Maryann for giving hope to the hopeless!

1

Professional with expertise in this field

Rating: 5

Hi Maryann, I'm a nurse who works in adult oncology. I had a patient last night who found his way to us and a very important surgery because of you. I wanted to thank you for what you do and for the ginormous amount of hope and happiness you have brought to this man and his family's life. He was crying tears of joy for the way you changed the path of his life.
Thank you for what you do

Professional with expertise in this field

Rating: 5

The NCAN provides a very unique support for the many patients with neuroendocrine tumors (NETs). When diagnosed with a rare tumor such as a NET, good and unbiased information is hard to find. NCAN organizes outstanding patient-oriented conferences of excellent quality.

General Member of the Public

Rating: 5

Top notch organization. NCAN has helped my family when my Mom was diagnosed back in 2007. We attended many of the conferences and received invaluable information from them. We took advantage of the hotline when we had questions and always knew we had a understanding and concerned voice on the other end. Thanks Maryann and Bob for all you do for the entire NET community. You are very much needed and appreciated.

1

General Member of the Public

Rating: 5

Wonderful information that was informative. Education for Neuroendocrine Cancer that is so much needed. I received my free packet in a very timely manner and refer to it often. Cannot thank this awareness network enough!

1

General Member of the Public

Rating: 5

I was first introduced to this organization by my BF who was diagnosed with this form of cancer. Despite being a health care professional I had never heard of this cancer nor its prognosis. I read the educational material and became involved with some of the websites and Facebook pages dedicated to this disease. I was very impressed with the sharing of medical providers treating this condition as well as the ability of members to openly share their disease process and ask others with this disease what treatment options they had experienced as well as what worked for them and what did not. My BF was very active in this community and well known by many for her educational push to learn more about this disease and share her education with fellow members. She attended the national conferences and was a spokesperson for this organization involving as many people as possible about Neuroedocrine Carcer Awareness. The disease took her last summer but through this network she left many to carry on where she left off.

General Member of the Public

Rating: 5

I was diagnosed with a lung carcinoid in 2014 from an incidental lung x-ray for another surgery. While recovering I was searching for support & found NCAN. I am very grateful to Maryann & Bob Wahman for starting this organization. I was able to learn more about this disease as well as meet alot of wonderful people.

Sharon Heuser

1

Professional with expertise in this field

Rating: 5

It is an honor to be able to work with and support Neuroendocrine Cancer Awareness Network (NCAN) founder and Executive Director Maryann and Bob Wahmann in their outreach efforts to the NET cancer community. Since Maryann’s diagnosis in 2001, the Wahmanns have devoted their lives to supporting thousands of patients in this rare disease community, annually hosting four regional patient education conferences and holding a national conference biennially. They are constantly striving to expand the information channels they use to reach patients throughout the country—making printed materials available to the 15-plus local patient support groups across the country, holding regular leadership training programs for local leaders, hosting an active online presence through their website and blog – with several thousand visitors monthly – and being available 9 AM to 9 PM 7 days a week for calls which come in from patients around the world. Our experience in working with NCAN can be summarized in a quote by famed anthropologist and humanist Margaret Mead: “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has.”

1

Donor

Rating: 4

NCAN provides neuroendocrine cancer patients and caregivers with accessible education and resources to assist with their care. In addition to providing personal assistance over the phone and through mailings of information, they host regional education meetings around the US, featuring expert physicians. They are among the most proactive patient support groups, ensuring that patients can have access to resources and education even if they live far away from major metro centers. The heads of this group are patients themselves and they have been bringing awareness and education to this underserved community for more than 10 years.

1

Advisor

Rating: 5

I've been a part of several awareness networks and peripherally involved with many more Cancer groups, and NCAN is easily at the top of my list. From the top down the people I've met and the resources they offer patients and families is remarkable. And it's constantly being updated, refreshed and adjusted to fit the needs of Neuroendocrine Cancer patients and families. I like that they go to their network to see what the members need, rather than the other way around. Every person I've had contact with in the network--from patients, to the organizers, doctors, speakers and conference attendees-- has been warm, friendly and helpful. Just what you're looking for in tough times. I'm positive this attitude starts and spreads from the top, from the organizers Maryann & Bob. Thankfully there are people (and networks) like this in the world.

1

Professional with expertise in this field

Rating: 5

I have worked with NCAN for over 12 years. They are dedicated and committed to help raise awareness and educate patients and healthcare providers throughout the United States. Over the years, there have been significant advances in diagnostic and therapeutic options for patients with advanced neuroendocrine tumors (NETs). Therefore NCAN has expanded their organization to bring this new information to the NET community. As the treatment landscape changes, NCAN is determined to create programs to address the ever changing needs of patients and assure medical professionals are properly trained to manage patients with these rare diseases.

2

Client Served

Rating: 5

A diagnosis of neuroendocrine cancer can be a bewildering experience. NCAN provides a wealth of information. The organization makes conferences possible. Bob and Maryann are like family. They add a personal touch, being there when help is needed. Just knowing that NCAN exists makes the experience of having this cancer manageable. If I leave a message, it is promptly answered. I am treated with courtesy and kindness. It is a blessing to have this oasis while dealing with a complex cancer.

1

Client Served

Rating: 5

I had a library neuroendocrine awareness display in my town on and Maryann sent me very helpful information as handouts. Last year, I was refused the drug Afinitor by my insurance company and my first call went to Maryann and Bob and they listened and offered suggestions. I've also been to two conferences sponsored by NCAN and it empowered me to know more about my disease.